Lori

I think each person handles it in their own way, me I want Plan A, B, C & D, but others are better just dealing with Plan A and don't want to think about Plan B unless they have to.

When my son was dxd in March I asked about Plan B and was told by him that he will cross that bridge if he has too, so now he is preparing to cross that bridge and I am quite sure he has not given Plan C any thought and won't unless he has too.

You and I are so much alike, it's our OCD coming out I am sure, but I try my best to honor his wishes and not ask or talk about Plan C.

Take Care

Karen

Lori,

I do not think that discussing Plans B and C are really of any psychological value. Rather I think that such thoughts lead to needless worry. I agree with Karen's doctors that those bridges can be crossed if and when necessary. I have always believed that I would do well, and except for a few "speed bumps," I have done well. Thinking positively has gotten me through the shingles and will get me through the post-herpetic neuralgia. Granted that this shingles thing has depressed me, but I have so much confidence in my ultimate survival that I have once again been looking at the horizon instead of my feet.

The OCD comes out in all of us after experiencing such a devastating disease. The trick is to tamp it down.

Cliff

Lori,

I am/was a planner. The Pre-AML Julie LOVED to plan! I love to travel but truly enjoy planning a vacation as much if not more than the actual trip. My family monthly budget has multiple retirement scenarios mapped out to 2026. I actually had my third daughter's birth induced three weeks early so her birth stone coordinated with the rest of us in the family (blues and greens) sick I know.

Then I was DXd with AML and my life imploded like everyone else. Just like others I was in limbo waiting for the sub-type determination and the subsequent treatment path-consolidation vice SCT. My med team did not sugar coat anything. They actually presented me and my husband with the worse case scenarios. During this waiting period, I opened my family budget with my ironically planned retirement of 2026 and just wept. How cruel. At this point, I did not know if I would survive induction and I foolishly spent my precious hours in this life planning a retirement I may never see.

While looking at my budget, pondering my mortality, I was also convicted by God how a had begun to neglect charitable (tithe) contributions. Up until being DXd with AML, I had lived an amazingly blessed life which included financial blessings. The more God blessed me financially, the less I gave. Getting AML with its uncertainty freed me to give back to God and His purpose. The old adage you can't take it with you is so true. So I turned the uncertainty of AML into a positive and have been blessed by it.

My med team is not inclined to discuss contingency plans either. I have one full sibling and at the end of Induction asked if he needed to be tested to see if we were a match and they said we have no indication that you will ever need a SCT. When and if that need presents itself, we'll cross that bridge then.

Before joining this amazing group, I was absolutely terrified of the prospect of a SCT. Now I know it is doable and is no longer the demon it once was. I have tried, to the best of my flawed ability, to adopt Cliff's approach. I must admit that I feel guilty at times due to the smooth path I've had-no real issues to complain about. In fact at almost 17 months post DX, I have days where it seems as though it did not happen. I actually went forward for prayer this Sunday for prayer regarding fear of relapse and to not lose my gratefulness to God for healing me (He is the great physician). I never want to forget how desperate I felt at DX not because I'm a victim (because I am not) but rather to NEVER take life and God's grace and mercy for granted ever again.

On the planning front, I have booked a family vacation Western Med cruise to Europe with two additional weeks touring Germany, Italy, France and England for June 2015. It is my husband and my 50th birthday and our 25 anniversary and I will live to share my love of travel to my three amazing daughters. Uncertainty and all!!!!

In my faith, there is no uncertainty in God's plan for my life just in my understanding of it. I struggle like everyone else. I am far from perfect. But when I do, I remember that I may now know what tomorrow holds but I know WHO holds tomorrow-almighty God. His plans for me are perfect and all of this has a purpose-I just need to find the positives.

I often read this from the New Testament-


Do Not Worry-Luke 12:22-27

22 Then Jesus said to his disciples: Therefore I tell you, do not worry about your life, what you will eat; or about your body, what you will wear. 23 For life is more than food, and the body more than clothes. 24 Consider the ravens: They do not sow or reap, they have no storeroom or barn; yet God feeds them. And how much more valuable you are than birds! 25 Who of you by worrying can add a single hour to your life[a]? 26 Since you cannot do this very little thing, why do you worry about the rest?

God bless you Lori as you navigate this journey with Keir. You are an amazing Mother. My family prayers for yours daily!

Julie

Awesome Julie!! thank you, that made my day today.
DaveJ

Julie, that was one of the most beautiful, spiritual and uplifting posts I have ever come across on this or any other board.

I read these boards not only to see if I can help with a question or a situation that someone may be encountering but also for help in dealing with issues that I may be having. I had the same retirement plan laid out, the same travel plans. The first thing I told the doctor after he told me I had AML was "...but we had plans and this is going to mess them all up." Now I have stopped making plans. I have a 40 year grade school reunion (not kidding, we Catholic school kids have a special kind of bond) coming up that I can't commit to. I work week to week, rarely scheduling clients far in advance. I'm going through life waiting for the other shoe to drop.

But reading your post has really helped me. I've been looking for the answer that nobody has - when am I going to die? I want to plan that too!!! Now that's really sick. That's what we're looking for when we scour the internet for statistics. Either reassurance that we're going to be around a while or someone to tell us to get your affairs in order, your time is near. But nobody has that answer but the Lord. And who am I to question His plan or try to figure it out?

I have read that passage from Luke before but for some reason it hit me like a lightning bolt this time. I have been blessed with additional time on this earth by God's good grace. And I'm not living it like I should be. But now I'm going to try. Thanks for the inspiration, Julie. Your post is what support groups are all about.

Lou

Thanks Dave and Lou,

When I was dxd, I was scheduled to leave for a spring break Caribbean cruise with my family. I did not buy trip insurance because I felt fabulous and the hemo doc I was seeing due to a wonky cbc did not think I had anything to worry about because I felt great but just in case referred me for a bmb. I said the same thing Lou, this can not be happening and the rest is history.....

Julie

Julie -- thank you for those great words of comfort.

A good friend of mine who has four nearly grown boys, a great husband and everything to live for had surgery today to remove a cancerous tumor. A week ago I would say that she had not a care in the world. Well, you and I know well that she had the ordinary cares that we all have ... and that we think are soooo important. But then it happens ... we or a loved one is DXed with cancer and all of a sudden our whole life changes.

Should it? Should we not have known that we could die in a second. Should we not realize that all that we have could be taken from us including our family and friends? Those of us who have been told we have cancer (or that a loved one had cancer) have lived through the possibility of losing it all. We know what it means to "live like your are dying." But shouldn't we live that way all the time?

The reality of it is that sooner or later we ARE going to pass from this life -- maybe before and maybe after some or all that we love. That is a fact of life and it is the ONLY fact of life that we can be totally sure of ...
Heb 9:27-28
27 And inasmuch as it is appointed unto men once to die , and after this (cometh) judgment;
28 so Christ also, having been once offered to bear the sins of many, shall appear a second time, apart from sin, to them that wait for him, unto salvation.

Julie speaks for many of us who feel like our cancer was a wake up call. We were deluding ourselves into thinking that we would live forever and all would be well and happy. Now we know differently -- is not that knowledge for us a gift from God? I know that it was for me.

I feel most sorry for the person who never has any problems, who goes through life like it is some huge party and has no cares. Assuming that he has just enjoyed every possible minute of it (which I doubt anyone does -- but let's assume that), now he is on his deathbed and realizes that it is all a thing of the past. You just have to feel sorry for this person. I can almost wish I go out with pain so that when the end comes I can thank God for being able to say good riddance to this nasty world of death, parting and decay.

But hey, I am enjoying the few more years He has given me -- I have had about five years from remission and looking forward to a couple more decades. But if He wants me tomorrow -- no loss, no problem. May we all find comfort in a loving and just God. -- dave

Lori,
I think this is most certainly a post that we can all relate to. My son was 2 years old at diagnosis. He will be three years old in just over 2 weeks. He is 7 months post chemo-only treatment. I struggle with uncertainty almost daily at times (slightly less when blood work is perfect). Faith most certainly got me through his treatment. It still gets me through. Like Julie, I have always been a planner. I have never been terribly materialistic, but I have a sister who is, and there was a time that I would compare our lifestyle to hers and feel like I needed to keep up. Since Julian's diagnosis, I couldn't care less about material things. I know my family is blessed, and if we can survive months in a hospital room, we really don't need all that much.
I struggle with planning too. I am a therapist by trade, and I know how valuable it is to take each day, each moment, as it happens, but I have not mastered that in light of our new reality. I have done some planning (with reservations), but it is hard, and I always feel like we need a contingency plan. As for treatment, I stick to treatment A, because I really don't want to plan out B until we are faced with that. I have learned how amazing and generous my family and community are in light of our experience. I still don't understand why this had to happen to my dear child, but I am so grateful for him. He is such a joy and a blessing! I don't feel that there is any use in pondering why. I just accept that it happened, give thanks to the Lord that he has been doing well, and pray that he can achieve the status of "cured" and go on to achieve a greater purpose in life. God can move mountains. We need to trust in and surrender to Him. To be totally honest, that gets me through the day to day better than any of my professional training. God bless you for being a caregiver to your son. I wish you all the best.
Jacki

It is so awesome to read all these posts. I believe that most teams do not want to give the family excess worries so there really isn't too much to think about except for the here and now.

I have been feeling pretty depressed about this whole matter. Growing up without a father at a young age, it didn't seem "right" that it needs to happen to my nephew and niece once again. Then again my brother and I certainly have had our many differences especially after my second marriage and we haven't been close for the past ten years. During the last seven months since his diagnosis we have bonded much better. I don't know what God has in store but I am certainly grateful and blessed that I have this time to reconnect with him. We all have to face our mortality at some point and time but as a younger person we never think about this. God has certainly made me re-evaluate relationships in my life and has certainly tested my faith.

In the answer to your question re whether to do the bmt again. I had my doubts today because my brothers flt 3tkd seems so resistant should we have even bothered now that he relapsed just two months after? Considering my brothers fragile condition I have changed my prayers. Only God knows what's best in our lives and if its His plans that my brothers AML is unable to go into remission maybe it is to spare us from further anguish in the future knowing how stubborn his cancer is. I'm unsure and so now I pray that whatever decisions we make that it is His Will. Just as Julie wrote her post. Luke 12 is certainly what God wants us to do.

I think this thread should always be in page 1... For all of us to read the beautiful & inspirational responses. They help me when things get dark and I'm burdened with unbearable worry or anxiety

Lea,

You and I are on the same page. Today I started re-reading "The Purpose Driven Life" for the first time since AML imploded my life. Wow-I am just so overwhelmed by the concept/intent of this book and it's meaning. I highly encourage reading it over the prescribed 40 day period. Day 1 highlights the amazing life of King Hezekiah in the book of Isaiah. He lived his life for God. Later in life he became ill and the Prophet Isaiah told him to get his affairs in order-he would die. Hezekiah begged God for life and God heard his tears and gave him 15 additional years. This story has so much meaning for me as I too have begged and wept for days to be added to my life. My daily pray is that almighty God has heard my prayers.

Dear All,

After re-reading all the responses here, something really resonated with me. So many of the milestones we cling to such as 2 years in remission, 100 days post SCT ect are man-made. Other specifics to this heinous disease we focus on are sub-type, favorable vice unfavorable, are meaningless if you are initially in a good category and then relapse. I am as guilty as anyone for clinging to these milestones and prognostics; however the more I know, the more I release how meaningless this information is if things go south. I have been focused on the upcoming date of Nov 17th. This is the one year anniversary since my last chemo. God has opened my eyes that this date is meaningless. I either trust Him or not. This date is a man-made milestone to alleviate my uncertainty. On Nov 18th, am I going to feel less anxious? I must put my trust in God. My faith fails and falters like everyone else. But I fix my faith on the unseen. That is the definition of faith for me. Believing in a purpose and a plan in my life that has never left the control of my Creator.

we took each treatment as they were happening, we new what was the plan in plan a, but we just focused on the current cycle.

We were positive for each cycle. Like Cliff mum also got shingles which was ironic but much more painful than the AML treatment.

Each time we got hit with something else we dealt with that and didn't think about what if's... even the BMT was technically mums choice she was in remission and once she made the decision we all didn't focus on the other option.

At the moment our focus is mum walking, and no consideration is being given that we will be having to do this again :)

xoxo

I love these posts also. We had a ski trip planned with my sister and her husband and also had not bought insurance. 2 weeks before we were to leave is when my sister got her diagnosis. Southwest was great and gave us a refund on their airline tickets even though they were non-refundable tickets. The lodge where we booked the room, not so nice.

You don't know how much hope means until you have gone through a period of time where you didn't have any like we did with my dad. My father was a perfectly healthy active 73 year old when all of a sudden he started dropping things and then walking to the left. We were thinking stroke but it turned out he had a brain tumor - Glioblastoma Multiforme grade IV - The doctors told us at diagnosis that it was not a matter of if but when. He was diagnosed January 2012 and we lost him December 2012. When you go through a cancer like dad's where there is no chance of a cure, it makes it so much better knowing there is hope for a cure for my sister. Don't get me wrong, it was still very difficult to deal with losing him a little piece at a time but to have hope for a cure and hope to have my sister around for many more years, is wonderful blessing from God!

This has taught us that you never know what will happen but you have to live life to the fullest every day. Enjoy what you have, enjoy your family, stay close to your parents if you are lucky enough to still have them here. No one knows how much time they have even if they are not ill. Trust in God that he knows best and that he has a plan, live life to the fullest, and even though I am still working on this part, don't worry about tomorrow until it gets here.

Debbie

I am so appreciative of all the comments and wisdom in the replies. I am still in a low level panic mode over Keir, even though he has had what must be one of the smoothest recoveries I've ever read about and is now 8 months post bmt.
I do not have the strong faith that some of you do and am very envious of those of you who are able to put your trust in God. I am trying to work on that but find it difficult..
I hover over Keir and fret to an atrocious degree over every and anything that is not quite right (does he feel tired? does he seem "off"?) I want to control the future - and I can't, of course.
When Keir went in for his bone marrow transplant, we had just or were in the process of losing two of our most beloved people, Andrea and Eddie. Early on in his diagnosis, I was given an "Immerman Angel", a caregiver to support me - and in late August, the person she was caring for (her niece) suddenly relapsed after several years. Now, it is obvious that I am a "glass half empty" sort as those are the examples that I dwell on instead of the many, many folks who are doing great. But I feel - so often - that we are living under a sword of Damocles and fear, I guess, that letting down my guard and relaxing will somehow - irrationally - invoke a catastrophe. I have been diagnosed with PTSD (again!) in connection with my experiences of the past 14 months with Keir but to be honest, have not found therapy or medication very helpful. I suspect that only time will really heal this problem, or perhaps Divine intervention (which I am seeking daily).